Log in or Register to participate in these discussions

5 year post-op for thyroid cancer - AMA :)

5 year post-op for thyroid cancer - AMA :)

Posted by Lia on Jul 2, 2020 2:49 pm

Hi all,

I haven't been to this site in awhile and thought I'd check in. The good news is the reason I haven't been on the site because I've started to forget that I even had cancer. Life went pretty much back to normal after a year or so (with occasional anxiety before follow-up blood tests/ultrasounds).

I was diagnosed in June 2015, had a full thyroidectomy (including removal of 10 lymph nodes - 8 of which were cancerous) in Nov 2015, and radioactive iodine around Feb 2016. Of course everyone's situation is different, but I'm happy to share experiences with anyone who's new to this and doesn't know what to expect. Sending well wishes to everyone currently going through this.

- Lia

Re: 5 year post-op for thyroid cancer - AMA :)

Posted by Lacey_Moderator on Jul 2, 2020 9:15 pm

Lia

Great to hear from you again! 

Thanks for sharing hope for life after cancer and offering to support others. 

What's the number one thing that go your through? 

Lacey
​​​​​

Re: 5 year post-op for thyroid cancer - AMA :)

Posted by Rayline on Jul 6, 2020 10:45 pm

Lia‍ congratulations, it is wonderful new!
!

Re: 5 year post-op for thyroid cancer - AMA :)

Posted by DC55 on Jul 23, 2020 12:23 pm

Hi Lia‍,
Glad to hear you are doing good. I'm a bit new to all of this. Got diagnosed in November 2019, and two surgeries plus radioactive iodine, and my doctor says I'm "fixed". I am about 3 weeks post RAI and I don't feel fixed. I'm exhausted. I have headaches and digestive issues, my low calcium makes my hands and feet go numb, and I can't get through the day without a nap or two. I am talking to my doctor about increasing my synthroid dose in hopes that it will help.

I know I was lucky in this situation, and I don't take that lightly. I should be happy that I'm all good but I don't feel it. Any advice on how to deal with this immediate aftermath? How long did it take to start feeling like yourself again?

Thanks, 

DC

Re: 5 year post-op for thyroid cancer - AMA :)

Posted by Lia on Jul 23, 2020 3:45 pm

Hi DC,

Sorry to hear you’re part of this club. I think the treatments were the hardest for me, followed by the long process of finding the right dose of synthroid. I had a total thyroidectomy and I think I started out at a 100 dose of synthroid, and eventually (over the course of 3 years) scaled up to 163. 

The first year I also had problems managing my energy, and would get a late afternoon energy crash when I’d have to lie down with a heated blanket. I increased my dose of synthroid but I also realized that taking a Calcium/Magnesium supplement in the afternoon was putting me to sleep! Thyroid symptoms can be so non-specific that it can be hard to figure out what’s what in my experience. 

I also got pins & needles in my hands immediately after my surgery discharge, but in my case it ended up being anxiety/a mild panic attack. Not suggesting that’s the case for you, but that was my only experience with pins & needles/numbness. Have you been in for blood tests of your calcium levels? In my case they tested me when I had the pins & needles to make sure I wasn’t dangerously low. 

I listened to guided meditations and made sure to get outside/go for a walk in nature to handle the mental/emotional aspects. I did one of these at least once per day. I also focused on eating healthy (which helped with gaining a sense of control). 

I’d say it took about 3 years to find the right dose of synthroid for me, based on minor energy and weight fluctuations. It did get better gradually during those 3 years though. I also ended up getting a sleep apnea diagnosis last year, and my energy levels only fully stabilized after that (again with the non-specific/combination of symptoms!). I still suck at thermoregulation (alternate between getting really hot and really cold), but I’ve always been somewhat bad at that. 

The worst of it for me was probably the first 6 mos-1 year, and after that it was just a frustratingly gradual process of finding the right dose.

I think we’re relatively lucky to have a less aggressive form of cancer, but as a result some doctors can be a bit dismissive sometimes hey? 

I’m not sure if any of this is helpful, but wish you the best! Would be happy to hear updates or keep in touch further :)

Re: 5 year post-op for thyroid cancer - AMA :)

Posted by DC55 on Jul 24, 2020 11:35 am

Thanks for the reply Lia‍!

I am currently on the 137 dose, and it seemed to be working for me but after my RAI I'm not sure now. Though I don't enjoy the fact that this might be a long process, it is still nice to hear from others so I know it is normal to feel this way. The energy is this biggest issue for me. I do one thing and then I have to lay down. I know the doctors say 4-6 weeks to get used to the synthroid dose, but I know it might take longer. My hormone levels are okay, but I still experience symptoms. I am sorry it took you 3 whole years to figure it out, but glad you are doing well now. Hope it doesn't take me that long ;)

I have had my experience with anxiety, but I don't think that is it for me when it comes to the numbness/pins and needles. My calcium levels are only a bit low, but my doc says that I am probably just someone who is extremely sensitive to low calcium so we will have to watch it so I don't have symptoms. I'm still getting my blood tested everyone once and a while.

This is really helpful! It is nice to hear from people with similar experiences. Lucky is good, but doesn't mean it still doesn't suck sometimes!

Thanks for taking the time to answer me, hope to use this forum to hear from others and do more chatting. Take care :)
 

Re: 5 year post-op for thyroid cancer - AMA :)

Posted by Lacey_Moderator on Jul 24, 2020 12:24 pm

Good to hear from you both Lia‍ and DC55‍ 

I thought you might relate to this storytelling video from a thyroid cancer survivor relevant: https://www.bigmarker.com/CCS-SCC/Stef-s-Story-Good-Cancer

Let me know what you think!

Lacey

Re: 5 year post-op for thyroid cancer - AMA :)

Posted by DC55 on Aug 8, 2020 12:50 am

Hi Lacey,

Great video! Thanks for the link. I definitely have experienced or am currently going through many of the things she mentioned. I was extremely unprepared for the serious fatigue and other symptoms, so it is nice to know I am not the only one.