Hey new to this group

Hi Jord and welcome.

I am 4 weeks post surgery for total thyroidectomy and neck dissection today. Mine was papillary, spread to lymph nodes. 

So far, for me I would still say the 'worst' bit of the process was the anxiety waiting for original diagnosis.

Now that you "know" what's going on and have a treatment plan there's less ambiguity I found. Do you have any concerns / any questions I may be able to help with? Feel free to private message if you'd prefer. 

E. Xx

Hi Jord

I was diagnosed with Papillary Thyroid Cancer in June.  I had a total thyroidectomy in May because my TSH levels wouldnt settle even with meds being overactive and whilst having that they found the growth which after testing was found to be cancerous.

I met with the cancer consultant on Tuesday this week and im booked in for radioiodine treatment on 13th October.

For me its the unknown anxiety thats getting to me just now. Im not sure what to expect when im admitted to hospital and im concerned how im going to handle the boredom being isolated for 6 days in a room myself. 

Im sure we'll all get through it though xx

Hi Anj 1979 . I was diagnosed in July with Papillary thyroid cancer, I had my surgery last week , it all when well , and now I am recovering. Now I know is hard when it comes to isolating but with opinion keep positive, have probably some iPad at hand , but I am shore you can have  video call with friends and family , if you like colouring books for grownup are good , I had last Xmas one I find et so good to keep your mind busy. I remember been in the lock down with my children the only thing I found to keep you going , is , been on a video call with friends and family. We are al getting through this and we can do et , keep strong . Now what doctors told me in one month time I will be in a room by my self for observation I think I am having radio iodine, i am shore is this, they going to make appointment I am scared as well been too days on my own. Keep well, your self and take et easy. 

Hi jord 

I had papillary cancer had 1 side of thyriod  removed in November last year the the other in December. 

Then radio Iodine treatment in April , was a shock at the start plus having covid in the mix and not having family around in hospital. I can only say it wasn't as bad as I thought,  I found after the op only issue was the drainage tube which was uncomfortable It was easier after 2nd I'd recommend a v shape cushion to support your neck in bed it helped me alot.

Just ask your consultant anything that's worries or concerns you as it's alot to take on board or the nurses as they help, I recovered very well , guess we are all different? But feel more myself specially now my thyroid meds are at correct levels.

It may take a while to process , it did me , but on the whole I tried to stay positive some days I'd have a wobble but I felt very blessed as I have great support and a fab consultant . 

Take it day by day don't be hard on yourself if you feel low tell people around you , but mostly,  you are not alone myself and people here have gone through the same as you and are recovering well.

I wish you well and speedy recovery 

Sending you bug hug 

Xxx

HI i am on a diet from now until too weeks and i am self isolating for too weeks as well , i will be having radio iodine treatment and it will be new to me .I can see that you had all gone throw the iodine treatment and your thyroid levels are correct  and that is very good , because my are still not , it would be nice to find out  how long is taking to get them at correct level  ,or do i have to speak to my nurse maybe and find out . Thanks     

Hi MrsVWOZ

Hope your RI treatment goes well , I was so glad I could stay on my levothyroxine throughout due to the thyrogen injections before the treatment and also Im on hrt so I'd be a right barrel of laughs being off it for few weeks lol.

To answer your question since I went up to 150mgs in June  I've felt alot better so 6 months for me as I started taking levothyroxine middle of December when they removed the remaining side.

I was very tired before on lower dosage my legs ached alot as I didn't realise how the thyroid is connected to muscle performance.

My consultant calls me every 2 months, prior to that I have to get my bloods checked so can be adjusted,  its really important that you are on the right amount as it has to suppress your TSH if not cancer may return as even if thyriod is removed thyriod cells can linger in the body for a good while but having RI treatment is best way to treat it, when I spoke to my thyroid consultant he said I didn't have to get my levels checked but my consultant at Stoke where I had my RI treatment was cross when I told her as its really important,  so keep speaking to your doctor or consultant and tell them you need a blood test specially if you are tired and have no energy, not fair on you !

Unfortunately at this time getting hold of doctors is hard but you are a priority,  I always say I'd rather be a pain in the bum then not know? 

Hope it helps and I have waffled on ,

Best of luck with everything x

Hello and thank you, it make sense all your explanation about et , I am on 125mg Levothyroxine , my nurse contacted me and told me weekend I should take 150 , but I am feeling ok , maybe now and then slightly tired , and still if I have been using my energy. I will speak to them on Friday I am going for COVID swab , and chest X-ray , but I my contact them as well soon as possible. Do you think I have to have blood test every week to make shore I get the right amount? Thank you very much . Xx 

Glad I can help 

They only tested me properly when I saw consultant before my RI treatment as think it takes a while for extra dosage to adjust? So don't think they will check bloods that often I guess it's how you feel aswell but even tho your OK on 125 you may feel lots better on the 150? That's the thing having no thyriod it's getting dosage correct.

The day you have RI have a good dinner as they won't let you eat till 4 hours or so after taking tablet I missed the dinner rounds ! But you can take any food in for after treatment I missed cheese ! Lol 

I put my phone in a jiffy bag with Hole for charger and it had no radiation, I just put cellotape on the hole when not charging as I had my kindle app to read , if you want to bring anything home with you after treatment and it has radiation on it they keep it for 3 months! Untill you can have it , I didn't know lots of stuff till I was there ! 

Hope that helps 

Xxx

Thank you, very helpful information to know I do appreciate .xx