PLEASE GO TO MY NEW THYROIDECTOMY SUPPORT SITE AT HTTP://WWW.LIFEWITHOUTATHYROID.COM for support, questions, and updates!!
I had brunch with an ex-employee that I hadn’t seen in several years. While trying to downplay my thycan, my partner was like ‘honey, it hasn’t exactly been nothing!”.
So it’s been about 1.5 years since my thyroidectomy.
Quick recap: Had complete thyroidectomy due to cancerous tumor. Did NOT do radioactive iodine and the surgery went smoothly/easily. Even managed to lose 20lbs a year after by changing my eating habits.
What HAS been an issue for me are mood swings, especially around ‘that time of the month’. My period is a nightmare. It wasn’t like this at all before the thyroidectomy.
I went back on cytomel a few days ago and am hoping it helps stabilize things. My endo also is having me change the type of birth control I’m on and says I should use brand name, not generic, just to rule out any additional issues.
Late last year after I lost the weight, my body went wacky and I saw a Thyroid doctor who reduced my meds and took me off cytomel. This actually had a very adverse reaction and I became not only lethargic but had horrible short term memory loss. I couldn’t remember what I told people or what was told to me, which considering I am a program manager for a living (a job that entails lots of talking to lots of people), became very problematic.
Tip: Get a small laptop or iPad to take notes and document everything. This saved me at my job, I logged EVERY THING.
My endo upped my prescription and the brain fog lifted and I became human again. But even with a higher dosage I was still so sad, which made no sense considering my life is pretty fly.
So now back on cytomel (which is a T3 fast acting thyroid hormone) and feeling positive.
I know this is a fairly boring post but I get a lot of people reaching out to me about thyroid cancer. The biggest thing, honestly, is you have to pay attention to your body and emotional being. In some ways, you almost have to re-learn yourself and what certain physical or emotional signals really mean and stay on top of your medical care.
You can’t just get that original prescription and hold steady to that for years. Get your thyroid levels tested minimum once a year, more so if you are tired, gaining weight, lethargic, depressed, cloudy minded, or anything that doesn’t “make sense”. DO NOT let it ‘creep up’ into your life and then just ‘deal with it’. Go to the doctor, get it sorted out. Life is too short to live an inferior life when something as easy as an dosage change can brighten your life!!!
I’ve been enjoying the podcast by Robb Wolf a lot lately with regards to diet and fitness.
http://robbwolf.com/podcast/
Not sure if you’re into the whole podcast thing, but there seems to be some good stuff in there (though I usually like to skip past the first 5 minutes or so of banter).
I usually don’t have the patience to sit and listen to something (unless I’m in my car), but I’ll check it out, thanks!!
Hey there,
I stumbled upon your blog after googling “post thyroidectomy blogs” since I just had a thyroidectomy 2 weeks ago and am worried about getting back being active! My papillary thyroid tumor was discovered only 2 months ago during my routine “lady” physical. I was completely surprised (no risk factors, lead a healthy active lifestyle, only 30 yrs old etc), and it was quite a whirlwind from diagnosis to surgery. I still have that tight, awkward feeling in the front of my neck, but healing quicker than I imagined.
Hope you don’t mind if I ask you some questions, I appreciate any tips!
1. I read that you didn’t have the radioactive iodine treatment. I am wondering if it was recommended to you and if so, did you get a second opinion? My surgeon recommends it, but after doing some research, my gut tells me not to do it, at least not yet. My pathology was one, 2 cm papillary nodule, did NOT spread to my lymph nodes, but tumor was pretty close to the edge of what was taken out.
2. How long did it take for you to get back on your bike?? I ride (though not nearly as hard core as you sound), mostly for triathlons that I do in the summer. Obviously I’m not doing one this summer, instead, I’m currently sitting on the couch with my dad watching the Tour de France! My energy levels are ok, I think, but I’m anxious to get out and be active…
3. When did you start taking the Cytomel? Did you start off with Synthroid and add it on later? I started Synthroid right after surgery, but I haven’t had my blood tests yet. I’m a little apprehensive about how long it will take to find the right dose, dealing with varying energy levels, and what lies ahead.
I’m so glad I found your blog. You’re a great writer and I love your humor. Cheers and happy riding!
~fellow Thycan (can I say that yet? haha)
Hey Kendra! Congrats on the thyroidectomy 🙂
Please, ask any questions you want!!! That is why I have been so public about all this, so people don’t just see scary horror stories of a post thyroidectomy life.
1. Yup, no Radioactive Iodine (RI) for me! I personally already had that opinion when I met with the endocrinologist and he agreed with me on it. My tumor was bigger than yours but contained and did not spread to the lymph nodes. I’m NOT a doctor and please do not take this as ‘medical advice’ but ask your surgeon / endo / post care physician if you can delay the RI and then if blood tests/ultrasounds in the next year or two show potential cancer growth, do it then?
2. I think it was three months for me. I started walking a bit, got fatigued a lot. Maybe less than three months but I took it EASY. Work was overwhelming me, so I was tired a lot. 🙁 But I did a triathlon (my first and last lol) less than a year after and trained for months prior to that and did well. 🙂 Take it easy and man, I’m jealous, i want to be watching the TdF right now!!
3. I took cytomel and synthroid right off the bat. I suffer from depression and after researching it, the endo also agreed with my findings based on studies he was aware of and we started with it right after the operation. I went off of cytomel for a few months and felt terrible/depressed, so I started again and am doing great. I keep my thyroid levels high to help with the depression but my endo is OK with the current levels. I need to go get re tested for levels and my two year actually!! I hate needles!!!! They never get better, do they 🙁
I got lucky and was on the right dose from the start and never should have tampered with it. I was having lady issues and thought that it was related to the thyroidectomy. Still unsure on what is causing the lady issues but went to three doctors and they said it’s not related.
Just keep in tune with yourself. If you start feeling glum/sleepy/off, don’t just write it off – think to yourself “Is this how I would normally respond to this situation?” and if the answer is ‘no’, then make a doctor’s appointment asap!!
And you are definitely a fellow thycan – welcome to the club. 🙂
:HUGS:
Sparky
Hey All!!
Well this is weird and different for me. Never responded to a blog let alone read a blog, so here goes.
One week, exactly since my TT. It has been exhausting except for the crazy turn of events today which to my excitement…FULL OF ENERGY. I hope I stay like this. I didn’t nap at all today and it’s 12:10 AM and I feel like I need to make myself go to bed.
Back up, I went in for surgery last Friday morning. Papillary Thyroid Cancer. I woke up super sore but that’s to be expected. I was started off that very day with Armour Thyroid, which is a NDT (Naturally Desicated Thyroid) that comes from a pig. hmmmm who knew. I’m a tree hugger/vegan (because the whole cancer thing scared any desire to eat meat or dairy right out of me) but taking a dehydrated pig thyroid seemed more natural and safe then taking a synthetic drug, which who knows what that will do to you later, anyhow….was pretty drugged up that day but woke up the next day feeling great, except for the sore throat and slice in my neck, full of energy. I went home that day and went to the beach. Started feeling a little sleepy and then it hit. Exhausted. I’m sure it had a lot to do with everything I just went through.
Got up the next day and walked down to the harbor for breakfast. Came back and crashed. Hard. Woke up and went down to the pool. Felt pretty great. Then crashed…again. Monday, trashed and then some other things started to happen. Swollen lips with small blisters. Muscle cramps in the legs. Headache. Twitchy and the disconnect from brain to hand and brain to mouth. Tues…same. Wens…hallelujah choir!! I woke up this morning and feel great. Same swollen lips, muscles cramps and headache. twitchy and disconnected but I am not tired at all.
I’m very excited and hope I feel like this for at least another day. I have my pathology appointment tomorrow to find out the results from the surgery. I am encouraged by the fact that you did not choose to do RI right away. I may do the same. At least now I have some ammo to go in with and know that I have a choice. BUT I was wondering, what are normal numbers? I know that with the synthetic hormones they only give T4 but the Armour has both T4 and T3. This whole numbers game is new to me and I am also realizing it’s going to be my lifeline. I have nooooo idea what I’m even shooting for and I don’t see my Endo for a month. hmmmmmm
That’s my story and I want to let you know that reading yours has helped me so much. Thanks and keep blogging. I’ll keep reading.
Hey Skeeter!
Thank you for your post and congrats on your TT!
I have never heard of taking pig thyroid, how interesting. I will look into that more for the fun of research.
Get lots and lots of sleep!! You need to heal.
I need to dig out my numbers but it’s different for every person – a lot depends on your height/weight/gender. But my #1 rule for knowing if you have the right levels is how you FEEL – mentally and physically. If you start feeling depressed, eating too much, sleeping too much, you are low. If you pretty much stop sleeping and are jittery, it’s too high. So pay VERY close attention to your body and mind – don’t just write something off as a ‘bad day’ if it keeps happening.
Please keep me updated. Thanks to stories like yours, I decided to start a new blog called LifeWIthoutaThyroid.com and would love to share your story ,if you are OK with that.
Let me know how you are doing!
Cheers,
Sparky