Scan results after RIA

Hi TrinityTrace 

I can't help with how long it should be before you get your results back, as I had a different type of cancer, but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Have you been allocated a cancer nurse specialist (CNS), sometimes referred to as a key worker or Macmillan nurse, as they should be able to let you know how long you should expect to wait for results in your area? If you don't have an allocated nurse you could ring your consultant's secretary and she should be able to give you an idea as well.

Hi there,

I had my RAI on the 19th February with scans on the 23rd and have an appointment on the 12th March to find out the scan results. It's quite an anxious wait isn't it. Hope all goes well with you! 

Hey Ocean,

Thanks for the reply, yeah it is awful with it being so far away.

Good luck with yours

Hi

Hi! The waiting is so hard isn’t it…I hope you’re doing ok with it all?

I had my RAI on 24th January and have my appointment for results on 28th feb (2 weeks to go!). I asked why so long and was told it’s because they have to analyse the scans alongside the bloods and the bloods are radioactive when taken so they have to be frozen for 3 weeks before sent off to the labs and then they take 3 weeks to come back. Your appointment should be 6-8 weeks post scan…mine was 11 so I made a fuss and they’ve reduced it to 9 - my consultant is going away for 2 weeks hence it’s not in the normal time frame frustratingly. I switched off from it for the first few weeks but feeling more nervous now it’s approaching. 

Aww cheers,

They haven't taken any bloods from me though.

I assume you meant the 28th March lol 

I am doing ok but I'm sooo soooo tired, I've had my Levothyroxine dose increased as I saw endocrinologist and my bloods have to stay 1.1 because I have thyroid cancer he said so increased dose to 175 from 150... I keep getting achy pains in my neck and to top it off I now have toothache and I'm struggling to get to see a dentist so life is so frustrating and hard atm grrr

Hope you are well ️

Yes I meant March…oops! Shows how my brain is functioning atm!!

Im always amazed how different everyone’s treatment process is…I thought everyone had bloods taken for the thyroglobulin measurement alongside the scan. In which case I don’t know why you have to wait so long…so frustrating. 

And toothache on top of it all is horrible. I hope you see a dentist sooooon! 

I’m not brilliantly well myself - I have young children and we’ve literally had back to back colds and viruses since my op last October…really hoping the spring and summer will bring a break from it all! 

Hope you feel better soon x

Hey,

So I've lost my voice last few days with no sore throat?!? I've been having random achy pains in left side of my neck lately so I rang oncologist secretary to ask him for advice. I recently have had a Levothyroxine dose change to 175mg from 150mg on the 28th Feb so wondered if it could be that? I've also missed my cycle (period).

I was due to get RIA results on 10th April but she informed me that they have moved it to the 2nd may .

She said he may want to see me sooner, anyone any advice or anything, on missed period and dose change? Anyone experienced these issues?

Hey TrinityTrace,

I'm so sorry that they've pushed your results date further! Thats so annoying, I hope the time goes quickly for you. How is your voice and neck now? 

As for your levothyroxine dose change, that might have an effect on your period. For around 4 or 5 months since starting levothyroxine my period changed completely - very light to almost nothing, especially when I was on too high of a dose. It's gotten more normal eventually, I think changing doses can make your body freak out slightly and so you get a missed period, and as well with going through RAI. My period is still shorter than it used to be prior to my operation and treatment. I'd contact your doctor if you're especially worried about it or if you miss another one. There's not much info that I've seen around periods and levothyroxine, kind of annoying really! Hope you're doing okay :)

Hey Ocean,

My voice returned and oncologist secretary rang back to say that he doesn't think it would be like that now so advised I see gp as I may have some infection. Been put on Doxycycline and it's getting better now so guess I did!

My neck is still randomly aching but he didn't mention whether it was anything.

I finally got my cycle like 10 days later lol 

And the wait!!! Everyone is saying maybe it's good news he moved it back so far but in my head I'm like well they know we waiting to see if everything is alright surely he can give me 2 mins and tell me. My thyroid nurse rang and she said she couldn't see them on the system but I don't trust her as she fed me loads of excuses when I tried to get the results of biopsy just so she didn't tell me until I saw surgeon. Anyway she is going to see if she can find out and I should ring her after next week as she is off.

Seems like I always have some infection lately aswell...

Hope your well and thanks for the reply x