Hi everyone.: M, 49, just had TT due to papillary... - Thyroid UK

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Hi everyone.

CameTheDay profile image
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M, 49, just had TT due to papillary carcinoma. Didn't know I had cancer six weeks ago, so not sure how I feel about it. Coming up two weeks after the second op, and I'm still incredibly fatigued. I have RAI due end of July, and hate the idea of being this knackered throughout the summer holidays!

Anyway, looking forward to reading through the threads and having somewhere to ask questions. Thanks for having me!

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CameTheDay
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Marz profile image
Marz

Sorry I do not have any knowledge to share that is helpful. I just remember sharing special moments with my Grandson when I took him away whilst his Mum endured the RAI treatment ...

So hope all goes well for you. Keep posting and asking for support ...💜

CameTheDay profile image
CameTheDay in reply to Marz

Thanks for the reply, it means a lot.

Nanaedake profile image
Nanaedake

I'm sorry you had cancer, it's such a shock.

The good thing is that papillary cancer is very treatable and once you recover you can get on with life again. Tiredness seems to be common if you read the threads here. Also, you will experience thyroid imbalance with the dramatic change in hormone levels. This can make you feel very emotional and not yourself at all. On this forum, people will understand but it's very hard for family and friends to understand.

You could make sure your vitamin D level has been tested and is in a good range as there is some research to suggest that recovery is better if vitamin D levels are good. Generally on this forum, it's suggested that vitamin D levels should be around mid-laboratory range. You could ask at your next hospital appointment or when you see the GP to check vitamin D levels.

vitamindcouncil.org/vitamin...

Are you taking levothyroxine or T3 in preparation for RAI? Have you been given good instructions about how to take levothyroxine if you've been started on it? Have you been informed as to whether they saved all your parathyroid glands or whether you lost some? This is all good information to know.

If at all possible, get print outs of all tests and results and keep your own record as I found departments often did not communicate and a lot of time was wasted chasing results that were lost or missing but once I kept and took my own copies of results it speeded things up. Always take photocopies so that you have originals as the doctors often asked to keep the copies I had taken with me to appointments.

Stay on this forum as there is a lot of help here. Butterfly Thyroid Cancer have information on their website which you might find helpful too. The vast majority of people on this forum have Hashimotos which is an autoimmune thyroid disease that causes hypothyroidism. The course of the disease is slightly different from that of hypothyroidsm following thyroidectomy. Once your cancer is treated you more or less get handed over to your GP and that's when you really need the advice of this forum. Most GP's never see a thyroid cancer patient in their lives and if they do, it will most likely be only one patient. I don't think their knowledge is very advanced.

CameTheDay profile image
CameTheDay in reply to Nanaedake

Thanks for taking the time to reply in such depth! I'll definitely ask for paperwork at my follow up apptwith the consultant, and request a vit d test. I was started on 150mg levo the day after the op. No advice was given about taking it, but I know some nurses and they recommended taking first thing and not eating for 30 mins...

Emotionally, I feel fine. I have a history of anxiety and am on escitalopran, but I feel pretty damn chilled. Have done since I left a stressy job in January!

My consultant does the full sweep of tests, so I'll know my T3 as well as T4 as soon as thy decide to test me, I guess. I think they're cutting the levo a couple of weeks prior to the RAI?

They didn't mention parathyroids after the op. I'm waiting to hear back if the cancer had spread to my lymphs. I'll have a lot of questions when I get called in.

Thanks again for the great advice, and the warm welcome.

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