Hi everyone,
I was told that I have papillary thyroid cancer this week. I'm going to have a total thyroidectomy and potentially some RAI treatment afterwards.
I guess the thing I'm most nervous about is taking the thyroid replacement medication afterwards. I'm worried that its going to take a while to get the dose right and I'll feel the effects of that. Would anyone be willing to share their experience? Or their experience with the medication in general?
I'm 23 and was at the end of my masters and about to start my first 'career' job in a month or two. Its been frustrating at how much this has caused my life to turn upside down. I'm asking for a 6 month extension on my dissertation and have had to move back to my parent's house for a few months before I can move back out and start working again.
I'm very thankful for the treatment available for papillary thyroid cancer though. I feel very lucky that it will only (hopefully) be an operation and the RAI. It sucks but at least I feel like I can see the finish line for this already. Very much looking forward to getting this lump out of my throat and in the bin.
Hope everyone is doing okay, and if you're not I hope you're doing better soon.
Sorry to hear about your recent diagnosis and having to delay your studies @Ocean23, that must be incredibly frustrating for you and hopefully you can get back to it soon. I was on 50 mg Levothyroxine for 2/3 years before my diagnosis due to Hypothyroidism and the dose was increased to 125 mg after my TT and neck dissection. I have been fine on this dose and in fact it didn't need to be adjusted to suppress my TSH as it already was doing that, so no changes for me and I have been fine. It can take around 6 weeks to get into your system from starting to take it, so be prepared to feel tired and rest when you can until it starts to take effect properly. For me I was incredibly weepy before diagnosis and the Levothyroxine seems to have sorted me out with that as well, I was like that for several months before finding out I had cancer. Best wishes for your operation and your studies when you return to them. Let me know how you go on. x
Thank you for your reply Petal66 ! Thats very helpful, I'll be sure to be aware of this in my first 6 weeks. At the moment its just waiting for the operation which is about a month away... feels like its going to be the slowest month ever! All the best to you x
Hey hope your okay, im new to this journey to but didn’t want to read your post and not reply. Just wanted to say from my new experience my medication has been going okay, I think it now needs tweaking, but I should know more this week . I had a TT in March and papillary diagnosed in April from pathology.
Good luck with your surgery and RAI.
If it’s any consolation, I’m also 23 and was diagnosed with the same cancer April this year.. it’s really tough being in our 20’s getting diagnosed with cancer. We have so much we feel we need to be doing and want to do, and cancer totally takes over. I hope your uni accommodate your studies
in terms of thyroxine, im on 150mg, and I haven’t had any nasty effects at all. Sleeping regularly, taking it at the same time each day, regular exercise, and eating well can all help regulate the medication! I have always struggled with my weight, and now I think it was probably related to my thyroid cancer when I didn’t know I had it… however I have noticed some weight gain but I think that’s more because I h vent been training as regularly as I usually do due to treatments and surgeries etc. once I’m back to going to the gym regularly again, as all I’m doing right now is walking every day as I’m just recovering from my RAI treatment, then I hope to see my weight level out again. We are young and bounce back, you’ve got this x
Thanks for your reply Skye loren . I should be getting at least a 6 month extension so I think I'll be okay uni wise, but will just graduate later than my class. I'm glad to here things like exercising and eating well help regulate the medication, exercise has been a big part of my life so I'm looking forward to being able to focus on that a bit. I hope your RAI treatment went okay and you get the all clear soon! Wishing you all the best x
Sorry you won’t be graduating with everyone else!! Must feel a bit like covid all over again.. definitely focus on keeping active whilst you can, I trained in between all my surgeries and it’s what kept me going! What do you like to do? I do CrossFit and strength training…do you have a date for your surgery?
RAI went okay, just some delayed pain in the neck and fatigue but that was expected!x
I've done a lot of martial arts growing up and like swimming too! I like strength training as well but usually have to skip the heavy weights due to an old back injury. I've heard a lot about CrossFit! It looks fun, how long have you been doing it?
Yep, date for my surgery is early September so not too long now! Glad to hear your RAI went okay, how long did you have to stay in hospital for? x
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